{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T23:01:24Z","timestamp":1781650884054,"version":"3.54.5"},"reference-count":20,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,4,27]],"date-time":"2026-04-27T00:00:00Z","timestamp":1777248000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,4,27]],"date-time":"2026-04-27T00:00:00Z","timestamp":1777248000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100006093","name":"Patient-Centered Outcomes Research Institute","doi-asserted-by":"publisher","award":["RD-2020C2-20329"],"award-info":[{"award-number":["RD-2020C2-20329"]}],"id":[{"id":"10.13039\/100006093","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Endocrine"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>We compared demographic and clinical characteristics of patients with gastroenteropancreatic (GEP) and lung neuroendocrine tumors (NETs) enrolled in the NET-PRO study to those in the U.S. Surveillance Epidemiology and End Results (SEER) program to evaluate the comparability of NET-PRO as a resource for real-world evidence generation and patient reported outcomes (PROs).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>NET-PRO enrolled adults with GEP or lung NETs from 14 health systems between 2018 and 2024. SEER data included patients diagnosed with NETs from 2018 to 2021 across 22 U.S. cancer registries. We compared age, sex, race\/ethnicity, tumor site, stage, and surgery between cohorts using standardized mean differences (SMDs), with values\u2009\u2265\u20090.2 interpreted as meaningful.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We analyzed 1,974 GEP-NET and 394 lung NET patients in NET-PRO versus 38,942 and 11,265, respectively, in SEER. Most demographic and clinical characteristics were broadly similar between cohorts, with trivial differences by sex (SMDs 0.16\u20130.22) and moderate differences in mean age (SMD\u2009=\u20090.47 for lung NETs). Race\/ethnicity differences were larger, with Non-Hispanic White patients overrepresented in NET-PRO (SMDs 0.53\u20130.84). Tumor site and stage distributions differed modestly. Surgery rates were comparable for GEP-NETs but higher among NET-PRO lung NET patients (SMD\u2009=\u20090.47).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>NET-PRO demonstrates broadly comparable demographic characteristics to SEER across factors such as age and sex. While race\/ethnicity differences highlight areas for improved inclusion, other areas of variation suggest important future research covariates. These findings support the contextual comparability of NET-PRO with the broader NET population and its value as a resource for real-world evidence generation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>NCT Number<\/jats:title>\n                    <jats:p>NCT05064150 (Start Date: 2022-05-10).<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s12020-026-04611-w","type":"journal-article","created":{"date-parts":[[2026,4,27]],"date-time":"2026-04-27T06:48:59Z","timestamp":1777272539000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Assessing Patient Characteristics in Neuroendocrine Tumor Research: A Comparison of the NET-PRO Study to SEER Population-Based Data"],"prefix":"10.1007","volume":"91","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2425-3323","authenticated-orcid":false,"given":"Michael A.","family":"O\u2019Rorke","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bradley D.","family":"McDowell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tao","family":"Xu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rhonda R.","family":"DeCook","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian M.","family":"Gryzlak","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicholas J.","family":"Rudzianski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kimberly C.","family":"Serrano","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Abigayle M.","family":"Wehrheim","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Udhayvir S.","family":"Grewal","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chandrikha","family":"Chandrasekharan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joseph S.","family":"Dillon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thorvardur R.","family":"Halfdanarson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael J.","family":"Schnell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carrie L.","family":"Witter","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"T. Clark","family":"Gamblin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Syed","family":"Kazmi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lindsay G.","family":"Cowell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tobias","family":"Else","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heloisa P.","family":"Soares","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vineeth","family":"Sukrithan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sravani","family":"Chandaka","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hanna K.","family":"Sanoff","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fiona C.","family":"He","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David A.","family":"Geller","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert A.","family":"Ramirez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mei","family":"Liu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William","family":"Lancaster","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Josh A.","family":"Mailman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather","family":"Moran","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maryann","family":"Wahmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elyse","family":"Gellerman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth A.","family":"Chrischilles","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,4,27]]},"reference":[{"issue":"6","key":"4611_CR1","doi-asserted-by":"publisher","first-page":"e2515798","DOI":"10.1001\/jamanetworkopen.2025.15798","volume":"8","author":"A Dasari","year":"2025","unstructured":"A. Dasari et al., Epidemiology of Neuroendocrine Neoplasms in the US. JAMA Netw. Open. 8(6), e2515798 (2025)","journal-title":"JAMA Netw. Open."},{"issue":"5","key":"4611_CR2","doi-asserted-by":"publisher","first-page":"377","DOI":"10.1080\/17446651.2023.2237593","volume":"18","author":"S Pathak","year":"2023","unstructured":"S. Pathak et al., Understanding the increasing incidence of neuroendocrine tumors. Expert Rev. Endocrinol. Metab. 18(5), 377\u2013385 (2023)","journal-title":"Expert Rev. Endocrinol. Metab."},{"issue":"11","key":"4611_CR3","doi-asserted-by":"publisher","first-page":"1111","DOI":"10.1159\/000513249","volume":"111","author":"BCM Hermans","year":"2021","unstructured":"B.C.M. Hermans et al., Unique Metastatic Patterns in Neuroendocrine Neoplasms of Different Primary Origin. Neuroendocrinology. 111(11), 1111\u20131120 (2021)","journal-title":"Neuroendocrinology"},{"issue":"4","key":"4611_CR4","doi-asserted-by":"publisher","first-page":"525","DOI":"10.1016\/S1470-2045(17)30110-9","volume":"18","author":"DM Halperin","year":"2017","unstructured":"D.M. Halperin et al., Frequency of carcinoid syndrome at neuroendocrine tumour diagnosis: a population-based study. Lancet Oncol. 18(4), 525\u2013534 (2017)","journal-title":"Lancet Oncol."},{"issue":"5","key":"4611_CR5","doi-asserted-by":"publisher","first-page":"101794","DOI":"10.1016\/j.beem.2023.101794","volume":"37","author":"N Fazio","year":"2023","unstructured":"N. Fazio, A. La, Salvia, Precision medicine in gastroenteropancreatic neuroendocrine neoplasms: Where are we in 2023? Best Pract. Res. Clin. Endocrinol. Metab. 37(5), 101794 (2023)","journal-title":"Best Pract. Res. Clin. Endocrinol. Metab."},{"issue":"1","key":"4611_CR6","doi-asserted-by":"publisher","first-page":"43","DOI":"10.1200\/JGO.2015.002980","volume":"3","author":"S Singh","year":"2017","unstructured":"S. Singh et al., Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs. J. Glob Oncol. 3(1), 43\u201353 (2017)","journal-title":"J. Glob Oncol."},{"issue":"9","key":"4611_CR7","doi-asserted-by":"publisher","first-page":"1568","DOI":"10.1002\/cncr.35184","volume":"130","author":"M O\u2019Rorke","year":"2024","unstructured":"M. O\u2019Rorke, E. Chrischilles, Making progress against rare cancers: A case study on neuroendocrine tumors. Cancer. 130(9), 1568\u20131574 (2024)","journal-title":"Cancer"},{"issue":"2","key":"4611_CR8","doi-asserted-by":"publisher","first-page":"e9","DOI":"10.1097\/MLR.0b013e318222a711","volume":"51","author":"PJ Catalano","year":"2013","unstructured":"P.J. Catalano et al., Representativeness of participants in the cancer care outcomes research and surveillance consortium relative to the surveillance, epidemiology, and end results program. Med. Care. 51(2), e9\u201315 (2013)","journal-title":"Med. Care"},{"key":"4611_CR9","doi-asserted-by":"publisher","first-page":"e68788","DOI":"10.2196\/68788","volume":"12","author":"JP Hourcade","year":"2025","unstructured":"J.P. Hourcade et al., Personal Health Record Software for Neuroendocrine Tumors: Patient-Centered Design Approach. JMIR Hum. Factors. 12, e68788 (2025)","journal-title":"JMIR Hum. Factors"},{"issue":"9","key":"4611_CR10","doi-asserted-by":"publisher","first-page":"1568","DOI":"10.1002\/cncr.35184","volume":"130","author":"M O\u2019Rorke","year":"2024","unstructured":"M. O\u2019Rorke, E. Chrischilles, Making progress against rare cancers: A case study on neuroendocrine tumors. Cancer. 130(9), 1568\u20131574 (2024)","journal-title":"Cancer"},{"key":"4611_CR11","unstructured":"E. Surveillance, and End Results (SEER) Program,. Number of Persons by RaceHispanic Ethnicity for SEER Participants (2020 Census Data). 2024 [cited 2025 1\/29\/2025]; Available from: https:\/\/seer.cancer.gov\/registries\/data.html"},{"issue":"6","key":"4611_CR12","doi-asserted-by":"publisher","first-page":"1228","DOI":"10.1080\/03610910902859574","volume":"38","author":"PC Austin","year":"2009","unstructured":"P.C. Austin, Using the Standardized Difference to Compare the Prevalence of a Binary Variable Between Two Groups in Observational Research. Commun. Statistics-Simulation Comput. 38(6), 1228\u20131234 (2009)","journal-title":"Commun. Statistics-Simulation Comput."},{"issue":"12","key":"4611_CR13","first-page":"700","volume":"33","author":"SV Faraone","year":"2008","unstructured":"S.V. Faraone, Interpreting estimates of treatment effects: implications for managed care. P t. 33(12), 700\u2013711 (2008)","journal-title":"P t"},{"issue":"6","key":"4611_CR14","doi-asserted-by":"publisher","first-page":"e2113749","DOI":"10.1001\/jamanetworkopen.2021.13749","volume":"4","author":"JR Steinberg","year":"2021","unstructured":"J.R. Steinberg et al., Analysis of Female Enrollment and Participant Sex by Burden of Disease in US Clinical Trials Between 2000 and 2020. JAMA Netw. Open. 4(6), e2113749 (2021)","journal-title":"JAMA Netw. Open."},{"key":"4611_CR15","doi-asserted-by":"crossref","unstructured":"A. Liccardi, A. Colao, R. Modica, Gender Differences in Lung Neuroendocrine Tumors: A Single-Center Experience. Neuroendocrinology, 2024: pp. 1\u201310","DOI":"10.1159\/000539412"},{"issue":"17","key":"4611_CR16","doi-asserted-by":"publisher","first-page":"3156","DOI":"10.1002\/cncr.33533","volume":"127","author":"KA Dymanus","year":"2021","unstructured":"K.A. Dymanus et al., Assessment of gender representation in clinical trials leading to FDA approval for oncology therapeutics between 2014 and 2019: A systematic review-based cohort study. Cancer. 127(17), 3156\u20133162 (2021)","journal-title":"Cancer"},{"issue":"12","key":"4611_CR17","doi-asserted-by":"publisher","first-page":"1535","DOI":"10.1530\/EC-18-0478","volume":"7","author":"A Bongiovanni","year":"2018","unstructured":"A. Bongiovanni et al., Metastatic neuroendocrine neoplasia treatments in patients over 70 years of age. Endocr. Connect. 7(12), 1535\u20131541 (2018)","journal-title":"Endocr. Connect."},{"issue":"7","key":"4611_CR18","doi-asserted-by":"publisher","first-page":"653","DOI":"10.1056\/NEJMoa2403991","volume":"392","author":"JA Chan","year":"2025","unstructured":"J.A. Chan et al., Phase 3 Trial of Cabozantinib to Treat Advanced Neuroendocrine Tumors. N Engl. J. Med. 392(7), 653\u2013665 (2025)","journal-title":"N Engl. J. Med."},{"issue":"2","key":"4611_CR19","doi-asserted-by":"publisher","first-page":"125","DOI":"10.1056\/NEJMoa1607427","volume":"376","author":"J Strosberg","year":"2017","unstructured":"J. Strosberg et al., Phase 3 Trial of (177)Lu-Dotatate for Midgut Neuroendocrine Tumors. N Engl. J. Med. 376(2), 125\u2013135 (2017)","journal-title":"N Engl. J. Med."},{"issue":"6","key":"4611_CR20","doi-asserted-by":"publisher","first-page":"1177","DOI":"10.3390\/cancers16061177","volume":"16","author":"G Evangelou","year":"2024","unstructured":"G. Evangelou et al., Lung NETs and GEPNETs: One Cancer with Different Origins or Two Distinct. Cancers? Cancers (Basel). 16(6), 1177 (2024)","journal-title":"Cancers? Cancers (Basel)"}],"container-title":["Endocrine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12020-026-04611-w.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s12020-026-04611-w","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12020-026-04611-w.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T22:47:01Z","timestamp":1781650021000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s12020-026-04611-w"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,4,27]]},"references-count":20,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["4611"],"URL":"https:\/\/doi.org\/10.1007\/s12020-026-04611-w","relation":{},"ISSN":["1559-0100"],"issn-type":[{"value":"1559-0100","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,4,27]]},"assertion":[{"value":"25 November 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"11 March 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"27 April 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Subjects were enrolled in accordance with the ethical standards of the Helsinki Declaration. The University of Iowa served as the IRB of record for all sites (ID: 202104599) except Vanderbilt University (ID: 221155).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics Approval"}},{"value":"Informed consent was obtained from all individual participants included in the study.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to Participate"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interests"}}],"article-number":"141"}}